There's No Place Like Home

Sign we bought for Elise on Summer Vacation

As a Kansas boy, there is no phrase more familiar than the old line from the Wizard of Oz, "There's No Place Like Home". This was all that Dorothy had to say, along with clicking the heals of her red shoes together, to bring her back to her life in Kansas. It is a sentiment that many of us feel in our everyday lives.

Elise loved being home. Even if she was happy with wherever we were and what we were doing, she wanted to go home. It was one of the few words she was able to say with relative clarity.

We found this sign in the picture at Dorothy's House and the Land of Oz on a stop in Liberal, KS this summer. Elise used to love her red shoes when she was young, and she loved home. The sign was perfect for her. We found a home for it on the bookcase in her room until the night she died. That night we moved it to the mantle in the living room where it still sits today.

I have spent a lot of time thinking about "home" in the two months since Elise passed away. The sense of home and the comforts that it brings is much different right now. It is not a place full of bad memories by any stretch. But, it is a place full of emptiness right now. There is a hole in our home that didn't exist before. 

I set out to find some uplifting quotes about what home means to some. Obviously, I found some pretty good quotes. But, it was apparent to me that all of them had to do with comfort, light, a place of warmth, etc.

"There is nothing like staying at home for real comfort." - Jane Austen

"Home isn’t where you’re from, it’s where you find light when all grows dark."- Pierce Brown

"Home interprets heaven. Home is heaven for beginners." - Charles Henry Parkhurst

As I am learning to navigate life without Elise in it, that sense of comfort, peace, light, warmth is a bit harder to find right now. Elise's backpack is still hanging on the wall like she is headed to school on Monday morning. Her device is still plugged in on the shelf where it goes every day before and after use. Her empty wheel chair sits in her room. The lift to move her from one location to the next is charging in the corner. All the signs of her presence are here, but she is not. At times it is unsettling.

Kelly is gone to a conference out of town. Abby is in the basement working on her room. The house is completely quiet and nothing "has to" be done. Prior to this past two months, this was not a life that we lived. There was ALWAYS things to be done to care for Elise. I don't miss the amount of work at all, but I miss Elise terribly. I found this quote below while looking for quotes about what home means. I know that Elise is "here" in so many ways. I don't have to look far to find evidence of that. But, it is hard nonetheless.

"Home is wherever you leave everything you love and never question that it will be there when you return." - Leo Christopher 

Couldn't or wouldn't? There is a difference.

Sticker on Abby's Water Bottle

Over the last several months I have thought many times about the common sentiment that has been shared with me. When it came to Elise, so many people have said, "I couldn't do what you do." That sentiment never sat right with me, and I just never quite knew how to respond to that.

As we talked with palliative care and hospice near the end of her life, I finally got much more clarity after all this time. The social worker for hospice care said something like, "What you have done with her is amazing. The sacrifices were huge. It is a lifestyle. You made a choice to live your life in a way that would help her the best that you could while she was here."

As I pondered what that all meant to me, I landed on a belief that I have held for many years. "I couldn't do what you do" really isn't a true statement. I have always told people that I am just an average Joe in a very not average situation. If you have ever spent any time with me, you know that I do not have any superpowers. God didn't pick me because I could handle so much more than anyone else. That is simply something we have adopted in our society that is grounded in little to no truth what so ever.

So, if anyone could do what we did, then what? It boils down to "would you" rather than "could you". What if the statement was, "I wouldn't do what you do"? I'm sure many people have thought that over the years, but nobody is going to say that. But, at the crux of the statement, that is what it boils down to right? It isn't a matter of "could" but really a matter of "would". You could absolutely do what my family and I did. It would NOT be easy, but you could do it. So, the question really is would you do it? It is a rhetorical question. Until you are faced with that decision, you likely have no idea what you would do. At least that is how it was for me and many others that I have spoken with about this.

Elise has been gone now for over a month. My every day is so much different that it is sometimes unbearably uncomfortable. The quiet and lack of activity is unsettling. For people that spent so much time at home, we have been used to be SO busy that we could not take on more activities outside of the house. I now find myself with so much free time, I don't know what to do with myself.

When talking with palliative care back in November, the doctor said something to me that I have been thinking about ever since. She said, "Medical advancements over the years have been amazing and have allowed children to live longer at home. But, what we have failed to ask ourselves is, just because we CAN make it so that these medical interventions happen at home doesn't mean that we should. We have not thought about the burden that has been put on the family unit when kids are living at home with extreme medical conditions and not a lot of help from the medical community." This is incredibly true. As things got more and more challenging for Elise, we began to ask ourselves some of those very questions. What was "too much" for her, and also too much for us. I can tell you, these are not easy conversations. I'll probably delve into that more on another day.

We have several friends raising complex kids like Elise. We know intimately the struggles that they face. Telling them "I couldn't do what you do" isn't really helpful. Give them a hand up in whatever way you can. Send a card, phone call, text, make/buy a meal, sit with them, whatever that might be. Just be there. That is all that I wanted, and I'm sure that many others have felt the same way.